Empowering dialysis users and caregivers

Kamal Shah

Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself.
I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.

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My mother retired yesterday after a 37 year long stint at Andhra Bank. Along with my family, I went for the retirement function. It was really great to hear all the senior management of the bank pay glowing tributes to my mother's commitment, sincerity and capability.

She, by no means, plans to take it easy. She is now looking for opportunities and, if I know her well enough, will not be a stay-at-home person even after retirement. She had me prepare her resume a few weeks back. I have been pushing her to do something less exacting. I would not want her to do nothing for sure but I do not want her to take up a regular job!

Krishna, a very dear friend once told me that he tries to make progress on different fronts of his life regularly. I found that idea to be a very good one. I have been trying to do this of late. I don't remember exactly the specific areas he had talked about but I guess for me the important areas would be - career, finances, spirituality, health and hobbies.

On the career front, things have been going pretty well. I got started on a very exciting new project for NephroPlus a few months back. This project could really change the way decisions regarding dialysis patients are made in the country. It will not only impact NephroPlus patients but also patients from all over the country whether they are dialysing at NephroPlus or not! Things have become fairly hectic over the past few months with multiple streams of work picking up momentum and a large number of centres being opened this year - we are 30 centre strong now! So, on the work front, things have been pretty good!

On the finances front, things are just about stable. I am able to take care of my dialysis expenses and able to save just enough to buy the latest devices Tim Cook and his team come out with from time to time! However, a few days back, my Bank Relationship Manager visited me. He brought along a colleague who advises on mutual funds and they advised me to invest regularly in some mutual funds. They said I should be investing in a mix of Mid-cap and Balanced funds and keep a small part of my earnings in Fixed Deposits (FD). I hate FDs because the interest rate is so pathetically low that the returns are practically nothing! I have taken their advice and have set up a small portion of my salary into some mutual funds. I guess the Apple Watch might have to wait for some time!

On spirituality, I have taken one big step. I now go every Sunday morning from 9:30 to 11:30 to teach kids about the basic concepts of Jain Dharm. I believe unflinchingly in the basic concepts of Jain Dharm (not the various add-ons that have been introduced over the past many decades!) and I really enjoy teaching these concepts to the young, inquisitive minds (12 years and over), mostly in English. This needs me to read up on the stuff as well, something I have been meaning to do from a long time but haven't!

On the health front, there is one nagging issue - the bone pain in my right upper thigh and the neuropathy/bone pain in my feet. The left foot especially has been bothering me. There is a sharp pain in the upper, middle part and the numbness is crazy. I have no clue what this is and what the heck we can do to fix it! And then of course, there's the dialysis bit which I can't really do too much about. But things are stable here. Swimming is on as well.

I have taken on a new hobby these days. Reading! I am currently reading three books simultaneously! Two of them have been gifted by a dear friend from Bengaluru. The three books are of three disparate genres. One is an English translation of 'Parva' by Bhyrappa which is a de-mythified version of the Mahabharata. It presents the Mahabharata in a completely historical manner where there's no supernatural stuff happening. Very interesting take on the Mahabharata. It gives me a lot of clues into the truth behind the supernatural stuff that has been introduced into my religion as well. I also took to playing the keyboard (musical) after many, many years!

So that's an update on the major fronts in my life!

I really believe that it is very important for each of us to make small advances in each sphere that is important to us. Often, we get so engrossed in our day-to day lives that we ignore everything else. Again, these aspects could be different for every one of us. But it is essential to make a conscious choice of what's important and what is not and then work on each of these. They could change as well from time to time. We must make sure that it is happening consciously and not merely by default.

When I think about what I think, I find that whenever I am doing anything other than work, my mind wanders around like crazy. I am thinking about one thing after another all the time, continuously. For example, when I am swimming, I am thinking about a hundred other things, each for a few seconds. Instead of enjoying the swim, I am ruining it by not focussing on it. When I am driving as well, thoughts flood my mind; when I am drinking tea as well!

When I am feeling a little weak once in a way and am lying down, I reach out for my phone and check arbitrary things, things that are not at all important. I have noise in my brain all the time. Much like Brownian motion!

Many times, I feel I need to control my mind. I need to focus on what I am doing and live and relish every moment of it. I have heard that meditation helps to make the mind more peaceful, to enjoy the moment, so to speak. However, I find it very difficult to meditate even for a minute. The whole concept of sitting and doing nothing else and just emptying my mind and focussing on one thing like breathing for example, seems totally beyond me. I have tried many times.

So, when this article came up in my Pocket recommendations, I read it and found it to have some practical solutions to this problem. It talks about some easy ways to achieve the same results as meditation without the boredom associated with it. The results are similar to those achieved by meditation - at least the ones I am interested in - to reduce the noise in my brain.

I have started practising some of the techniques mentioned there and I think it might be working.

For the last few weeks, my bone pain has become really, really bad. A couple of days back, on my night off from dialysis, I woke up around 3:30 a.m. writhing in pain. I took a Dolo 650 mg and still couldn't go back to sleep. Currently, the pain is much worse than that during much of 2010.

As a senior nephrologist once commented, Mineral and Bone Disorders are the one thing in dialysis patients that doctors haven't really been able to get a firm grip over.

I have still not been able to arrive at the 'steady state' with respect to the balance between Calcium, Phosphorus, PTH and Vitamin D. We have played with the dose of Calcitriol, Cinacalcet, Phosphate solution addition to the dialysate and the dialysate Calcium level that would result in my levels being in the good range - and more importantly, staying there.

I haven't helped my cause by neglecting this in the current episode. I should have been much more proactive. I feel like an idiot now. Of what consequence is anything else in the world if I don't take care of my health?

I, the self-acclaimed 'savvy, proactive patient'!

I have reached a stage where I walk with a limp and almost every turn or twist of my body causes pain. Just what was I thinking?

Yesterday, finally, we have started Trial 1 - stopping of Calcitriol. I say Trial 1 because the frustrating part about this is that no one is really sure of anything. We will try this for a month and if it does not work begin Trial 2. And if that does not work either, begin Trial 3. Its so fucking ridiculous. In the meantime, if we do not get on the right track, continue to bloody suffer.

I'm sorry for the rant but it just feels so frustrating. Let's hope Trial 1 works.

My primary disease, Atypical Hemolytic Uremic Syndrome (aHUS) is classified as an ultra-rare disease. It affects about 1 or 2 in a million people.

Look at this from a doctor's perspective. A regular nephrologist would hardly see a handful of cases in his or her entire career! What is point in spending time in learning about this disease when there would be such little impact? The chances of anything new being learned to be actually put into practice would be almost zero! Why, then, must he or she not spend time on something that yields more 'bang for the buck'?

What about the pharmaceutical companies? When the total target population is a few hundred across the world, what incentive would be there for them to spend huge sums of money on research for drugs that could treat this disease? Its not like all the other possible work is exhausted and this is the only disease left, right?!

Where does this leave the Atypical HUS patient?

With little information forthcoming from doctors, not much advancement from pharmaceutical companies, we are left languishing, struggling to get back to 'normal'.

The situation is much worse in countries like India. While patients in some countries have access to Eculizumab, the one drug that could change their lives, India is not even on the radar for Alexion Pharmaceuticals to launch this drug in.

Why can't the drug be brought to India by patients who need them? It costs about Rs. 3.5 crore for a year's treatment and it could potentially be needed life-long. If there was a God, I would say, he has a sick sense of humour.

In all this gloom, it is important to find support. To reach out to people who are going through this hell just like you. That is why I started the Atypical HUS India Foundation. We have a website, a Facebook group and a Twitter account as well.

Chances are that you have nothing to do with aHUS. Chances are that the only place you've heard about this dirty disease is from me. But I would be really happy if you would take a minute, visit the website, like the FB page and follow the Twitter account (you can disable notifications if you like). The number of posts will anyway be very few. What worries me is when someone new is diagnosed with the disease, they would not find all this and that would rob them of a chance to get some support in dealing with this.

I plan to slowly add a forum and a latest news section in the website. I want to let Atypical HUS patients in India and their families know: You are not alone!